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Hi Dr. Stoll,
I have a pelvic nightmare and I don't know what to do anymore. I
hope you can offer me some direction. I can't find my particular
symptoms listed anywhere.
I'm 28 years old. Starting in 1999 or 2000, when I was 20, I've
gradually lost my sexual functioning and developed problems related
to urination and odd sensations that feel vaguely like the need to
urinate.
In chronological order, what happened:
1997 to 1999 - had a two-year relationship where manual and oral
stimulation felt normal and resulted in orgasms
Late 1999/2000 - started to have a sensation of bladder fullness
during sexual stimulation; painful intercourse
2000/2001 - even sexual arousal started to make my bladder feel
full; had a UTI and was treated with antibiotics, and though the pain
went away, the frequency and urgency remained, with only small
amounts of urine being passed; stopped being able to orgasm in the
way I remembered - would get a little excited, then all of a sudden
lose interest
2001 - present -
Periodic episodes where bladder feels full and voiding offers little
relief
Sometimes urinate and then feel another need to do so in 30-60
minutes
In between these episodes, voiding ranges from almost normal to
pitiful, and seems better if I made sure not to void too frequently -
the urine stream itself ranges from slow to fast, and between one
solid stream and split streams
No longer having sexual feelings, even when stimulated - when I
touch or push on the genital area, it feels like my genitals need to
urinate (I know that sounds strange) - manual stimulation is
uncomfortable and when I can even force myself to keep going, any
vestige of sexual sensation just peters out to be replaced by a vague
urinary pressure again - it's like the urinary sensations have totally
eaten up any sexual sensations that were once there
Almost always getting up at night 3+ times before falling asleep
And the most recent and disturbing symptom: The feelings of urinary
need have migrated, so that they're not just felt in the bladder - I get
sensations anywhere from below the belly button to the genital area,
even when I'm not touching any of those places - these sensations
are so annoying that I lie in bed unable to sleep - they're strange
sensations, not painful - the closest description I can come up with is
that it's like my whole lower abdomen is one giant bladder, with
different parts of it bothering me as the urine sloshes against those
areas - I know this isn't physically possible, but it's how I feel
Lately I've felt my urinary sensations presaged by odd twinges in
either of my feet, almost tickly - then it's like the odd feeling travels
up to my pelvis from the foot - I also get the odd leg twitch, but I
don't know if that's related
My doctor just says there's a condition called irritable bladder, and
it's no big deal, though last time also mentioned interstitial cystitis as
another possibility. He tells me that although he'll refer me to a
urologist and gynecologist, the likelihood of getting some real help
from invasive diagnostic tests is low enough that I might not want to
consider those tests at all.
I've had some idea over the years that my problems may have started
from a fall on my tailbone that I had in 1999. I walked out my front
steps in the icy cold, slipped, and slid down the three stairs onto the
sidewalk. After that I got up and kept going, not even going to a
doctor or anything for the injury. Now I notice that in addition to the
symptoms above, I have dull pain around my tailbone and lower back.
Also related to a possible spine problem thesis, I also had problems
with hills and stairs for a long time, because my legs seemed weak,
but I built them up with yoga and now they're stronger. I still don't
bicycle, though, because I'm afraid that would be too hard for me.
A few years ago, in response to my concern about my spine, I had an
MRI of the lower back. My doctor said the results were normal.
Also a few years ago, I went to someone who did a urodynamic study
and told me that my urine flow was slow. She felt that my problem
was a "narrow urethra", which could be stretched. I didn't like this
answer.
I worry that I'll never find a solution to my problems. I also have a
mental health problem, and sleeping properly is really important for
me. I'm struggling with that at the same time as these incredibly
distracting and sleep-depriving physical problems. I cry in bed
because I can't sleep and hate how I feel. I've also basically decided
I'll probably never enjoy anything sexual ever again. I try not to touch
myself anymore, because it's so unpleasant feeling. If only my
problem was not being able to orgasm - any sexual touch at all feels
awful. If the problems didn't keep me up at night, I guess I could live
with them, but as it is right now, I can't continue like this. I already
have enough mood problems that I need medication (the sexual and
urinary problems started long before I took medication, so I don't
think the medication is a factor), and if I lose sleep because of my
sensations, I might have to take even more drugs - heavy duty
sleeping pills, or something.
This is a real emergency. I don't even know when/if I'll be able to
sleep tonight. I need the best advice you can give. What do you think
could possibly be happening? Are there tests for it? What kind of
doctors should I be seeing? Any thoughts on what might work as an
emergency measure to calm down odd sensations? Even if I lie down
and try to relax into my body, I still have the feelings. I try
consciously to relax my pelvic floor, but that doesn't yield relief. I did
some yoga earlier today, and while doing that, I felt a bit better, but
afterwards the feelings came back.
Right now my next step is going for a pelvic ultrasound, because I
don't know what to do. But if the problem is nerve-related (e.g. due to
old injury), I don't see what good the ultrasound will do. Similar
thoughts about bladder cystoscopy.
Anyways, I'm going to try lying down again now... I hope I can sleep.
Thanks for reading,
Sara
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
Hi Sara,
You are not alone in your suffering.. There are probably a half million women and a smaller number of men in the US with similar or worse symptoms.
It is very possible that you have a chronic infection that was not fully treated by that short course of antibiotics..
The usual petrie dish lab cultures fail to detect the intracellular bacteria such as Ureaplasma, Mycoplasma and Chlamydia.
The fall may also have something to do with your
bladder symptoms. A pinched nerve at the L5/S1 junction is worth looking into (but carefully), since further injury is always possible.
Do you have any new symptoms of rheumatoid arthritis?
Do you think that you might have also picked up a Lyme Disease infection from a Deer Tick bite?
This is very common in those who have your complaints.
Here is a website which is devoted to women who have
been diagnosed with Interstitial Cystitis. Do some reading and see what applies.
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
Sara,
I have posted my recovery below, and I hope that it helps you. I also would like to add that it is extremely important to do some type of relaxation several times a day because right now, your mind is focused on your pelvic problems. I use a portable biofeedback machine several times a day, and it really helps, but meditation or self-hypnosis, whatever method would be very beneficial for you. There is also a stretch that helps get the blood flow to my pelvis. The website for that is www.miraclepainrelief.com/thompsonmaneuver.htm
I hope some of this information helps you. :)
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
"I've had some idea over the years that my problems may have started
from a fall on my tailbone that I had in 1999. I walked out my front
steps in the icy cold, slipped, and slid down the three stairs onto the
sidewalk. After that I got up and kept going, not even going to a
doctor or anything for the injury. Now I notice that in addition to the
symptoms above, I have dull pain around my tailbone and lower back."
That sounds like a PILONIDAL CYST. A fall on your tailbone can set those things off but that was an awfully long time ago for it to start hurting now. If you have someone who could look at that area maybe they could see if you have any holes in your crack, that is a sure sign of a PC, but many people DON'T have a hole, so if you don't have one, that doesn't mean you don't have a PC.
As to it being interstitial cystitis or irritable bladder, tobacco is the best thing I have ever seen on inflammation and you don't have to smoke it or chew it, all you have to do is mix it with hot water and put it where you are hurting.
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
I have compromised bladder/genital sensation that started at the same time I ruptured 2 disks in the lumbar region, the first, most noticable symptom was the "sexual" urges and "pain" during physical stimulation(I still would "feel" sexual urges occassional when caused by thought or visual stimulation, but that would totally disappear if any physical touch was initiated either by myself or my partner.
Through the years this has been an ongoing problem getting worse as my Back continues to degenerate. I know have instances, especially after activities that strain my back( last week I stepped awkardly off a high curb and my lower back shifted) and since then I have had NO URGE at all, I only know I have to go when I feel the wetness of the urine as it runs down my leg.. I cannot stop the flow, it justs lets go and I do not even "feel" like I am going... I must go to the bathroom frequently to avoid embarrassing myself(continence pads are no help).. I know that this will resolve IF the nerve damage isnt to severe, but I believe the day is comming that there will be permanent damage that will not heal..
Good luck and DO NOT let the doctor dimiss you lower back/tailbone injury as a possible cause of your symptoms.
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
Hi, Sara.
About your "doctor": apparently it is "no big deal" to him! It is not a danger to your life; it just takes away the one of the things that makes life worth living. I suggest you find a more caring and knowledgeable doc; preferably a female gynecologist with a womans' clinic.
This is pretty classic Interstitial Cystitis that has progressed to your sexual problem mainly via neglect of treating the bladder problem, in my opinion.
Start by collecting all of your medical records to have in your hand when you go for the consultation. In the meantime see the archives about interstitial cystitis and learn as much as you can about bracing of the levator ani on this BB.
Let us know what you learn.
Walt
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Walt Stoll [93.1889] on February 21, 2007 at 08:18:48:
Hi Walt,
Thanks for your advice. However, I'm confused, because when I read
about Interstitial Cystitis it always says it's a pain condition (I don't
have pain). And all I've read about IC and sex is also pain, not altered
and annoying (like feelings of urine pressure) sexual sensation. I also
haven't heard anything about IC leading to random travelling non-
pain sensations that go all around the abdomen and pelvic area, even
into the groin. I thought in IC you were just supposed to have pelvic
pain relieved on voiding; now my odd sensations occur in places that
don't even feel like my bladder, so even voiding doesn't help them.
And my sexual problems, even though they involved sensation of
having to urinate, started before the spontaneous bladder problems.
I've read on your BB about IC and body bracing, and while I've tried to
concentrate on not tightening my pelvic floor (and I do think to some
degree that has improved my streams, when I'm not flaring), I can't
say I practice a regular relaxation technique - even during yoga, my
head is going. There is a lot of stress in my life, and I do have a
tendency to go over my worries in my head. But I'm also concerned
that bracing might not be the underlying problem - that there's
something going on with the nerves to my pelvic area. I went from
having normal sexual sensations to having altered ones in the course
of a few months, years before the bladder started bothering me on its
own. I recall having a fall on my tailbone during that time, and I'm
concerned that my altered sensations are because of some damage or
pressure to the nerves leading into and through the pelvis. And if I
have nerve damage or compression, I don't see relaxation techniques
being enough for me. Is there some way I could rule out the nerve
damage theory?
I'm going to be getting an ultrasound (to see if there's anything odd
going on in the organs) and seeing a urologist soon, so maybe I can
get more information. I suppose the urologist may want to perform a
cytoscopy, and in that process he could see whether I have IC. My
ever-so-helpful family doctor is trying to line up a gynecologist, too.
The last gynecologist I went to with bladder problems confined the
visit to a painful urodynamics procedure. I don't even remember if
she asked me any questions. She just said something like "Your
stream is 1/3 as fast as normal. You probably have a narrow urethra."
That didn't make much sense to me, and stretching the urethra just
sounded painful - and I've heard that it's only temporary, if it helps at
all.
I'm getting scared because the sensations don't even seem to
originate in my bladder, so voiding doesn't help. There seems to be
absolutely nothing that will take the pressure feelings away, once
they start. The only "solution" I have right now is sleeping pills. And
all I can do is hope the sensations stop. Is there at least an
explanation for why my urinary pressure symptoms are now felt in
other areas than the bladder? If I even had an idea WHY, I'd feel a bit
better.
Thanks,
Sara
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sara [1256.2969] on February 21, 2007 at 14:54:58:
Thanks, Sara.
Take ANY chronic condition and list all of the potential symptoms that can result from it and you will find that the average is less than 50% of those symptoms are found in any individual case!
When you get tired of the number of additional "tests" that can be done and still have your symptoms, perhaps you will be ready to "see the forest for the trees" that it will be necessary for you to actually resolve this problem.
Conventional physicians are not trained to look at things this way. Remember that I was trained AS a conventional physician and practiced this way for the first half of my clinical career: Home page CV.
Let us know when you are ready.
Walt
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Walt Stoll [93.1889] on February 22, 2007 at 07:54:59:
Hi Walt,
I didn't mean to say that I'm not willing to try anything on my own to
help myself. It's just that after years of these problems, and trying to
consciously think about relaxing the pelvic floor, sometimes I think
I'm getting better, and sometimes I think I'm getting worse. Then I get
mad at myself for not "making myself better". I'm tired of telling
myself I'm a failure because I haven't cured my own body, because
then on top of my bladder symptoms I have anger towards myself
and low self-esteem.
I'm willing to try skilled relaxation, because I know it's beneficial in
general, even if it doesn't help my bladder. If I can get into it, I know
it can't hurt to try. I just need to approach it in the right spirit, the
spirit of nurturing myself rather than blaming and punishing.
I have, from time to time, tried autogenics or meditation or conscious
relaxation of the muscles in my body, but I don't know if I've ever hit
the right brain wave frequency for true relaxation. So I never know if
I'm really practicing SR, or just pretending. I took The Relaxation and
Stress Reduction Workbook out of the library once and read about
some techniques, but I still had the problem of not knowing whether I
was doing them "properly". I suppose biofeedback could tell me if I
was getting relaxation. I will look around and see if there's anyone in
my city who does that.
I still worry that there's something structurally or functionally wrong
with me that I can't work on (everything from my tailbone being too
high up and pulling too much on the pelvic floor, to the nerves being
irritated, to fibroids, to some infection that hasn't been caught), and I
want to make sure I'm covering all possible bases. I don't want to be
so convinced that it's bracing of my pelvic floor that's the problem
that I overlook other possible causes. I just want to be thorough,
because I want this problem solved.
Thanks for your advice. I'll let you know if I manage to get into SR
and do it for a few months. I guess I can't know how it will affect me
unless I try.
Sara
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sara [1256.3208] on February 22, 2007 at 15:04:43:
Thanks, Sara.
From what you have already said I believe you have had enough evaluation to rule out your concerns about conventionally correctable causes--to the limits of current advances in conventional medicine.
It is time to certify your SR and practice it assidously. The problem will be that, about a year from now, when your bladder is better, is that your sexual problem will have become enough of a habit that you will still need to deal with that. A good sexual dysfunction specialist will be your best bet then.
Remember, that there are specialized biofeedback instruments that you can use directly on the levator ani to focus on bladder and sexual dysfunction problems like yours. In MY opinion, although they can speed up results, the total body techniques are not only less expensive but, in the long run more effective. See the biofeedback archives for the references about where to learn about them. The information is free so you cannot lose by having the companies send you the particulars.
Let us know what you learn and how you do.
Walt
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Walt Stoll [93.1889] on February 22, 2007 at 07:54:59:
Hi Walt,
I didn't mean to say that I'm not willing to try anything on my own to
help myself. It's just that after years of these problems, and trying to
consciously think about relaxing the pelvic floor, sometimes I think
I'm getting better, and sometimes I think I'm getting worse. Then I get
mad at myself for not "making myself better". I'm tired of telling
myself I'm a failure because I haven't cured my own body, because
then on top of my bladder symptoms I have anger towards myself
and low self-esteem.
I'm willing to try skilled relaxation, because I know it's beneficial in
general, even if it doesn't help my bladder. If I can get into it, I know
it can't hurt to try. I just need to approach it in the right spirit, the
spirit of nurturing myself rather than blaming and punishing.
I have, from time to time, tried autogenics or meditation or conscious
relaxation of the muscles in my body, but I don't know if I've ever hit
the right brain wave frequency for true relaxation. So I never know if
I'm really practicing SR, or just pretending. I took The Relaxation and
Stress Reduction Workbook out of the library once and read about
some techniques, but I still had the problem of not knowing whether I
was doing them "properly". I suppose biofeedback could tell me if I
was getting relaxation. I will look around and see if there's anyone in
my city who does that.
I still worry that there's something structurally or functionally wrong
with me that I can't work on (everything from my tailbone being too
high up and pulling too much on the pelvic floor, to the nerves being
irritated, to fibroids, to some infection that hasn't been caught), and I
want to make sure I'm covering all possible bases. I don't want to be
so convinced that it's bracing of my pelvic floor that's the problem
that I overlook other possible causes. I just want to be thorough,
because I want this problem solved.
Thanks for your advice. I'll let you know if I manage to get into SR
and do it for a few months. I guess I can't know how it will affect me
unless I try.
Sara
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sara [1256.3208] on February 23, 2007 at 13:01:52:
Sara, why don't you give Brainsynch a try? They use binaural beats in the background and much cheaper than other tapes or cd's. The big bookstores carry them in the audio section (not music, usually). Some people have mentioned Jeffrey Thompson or Soma (whale sounds) as helpful. Not that expensive.
In Reply to: Re: Pelvic nightmare posted by Penny [1429.2450] on February 20, 2007 at 09:08:44:
I don't know if you are still having pain where your ruptured your disks but if you would try tobacco on it, I'd bet you money it would kill the pain and if you have inflammation there, tobacco would take care of that also. Tobacco can help back problems, I've had to use it twice on my wife. The last time she was about to cry when she got home, the next morning she walked out of the house as if there had been nothing wrong with her the night before.
Antiinflammatory (11 uM) IC~97=1,000 uM 20 mg/kg 20-150 mg/kg 200 mg/kg ipr rat ED 1-10 ug/ear IC50=0.1-5 uM IC50=21 uM IC50=31 uM
Anesthetic 200-400 4,000 orl cat 6,000 orl rat
Analgesic 100 IU 3 x day 2 mg/kg ipr mus
I will tell you though that those pain killers are a nerve block. Build a perimeter around the the disks and the fill it in, you must build the perimeter first to block the pain.
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sally [7059.1590] on February 23, 2007 at 17:05:38:
Thanks for the recommendation, Sally.
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Walt Stoll [93.1889] on February 23, 2007 at 07:53:52:
Thanks for the suggestions, Walt.
I looked in the Yellow Pages for Biofeedback, and the only place listed
was some kind of ADD centre. I looked at their website and they said
that the objective of their therapy was to increase the "concentration"
brain waves - beta I believe? - so it didn't look like the right kind of
biofeedback. Though their ad also mentioned "Relaxation", so I
suppose I could phone and ask them what brain waves they look for
if they're helping someone to relax.
I used to go to a pelvic floor physiotherapist, and she did pelvic floor
trigger point release and also taught me kegel exercises, but as far as
I know she doesn't use biofeedback instruments. There is no one else
in this city that does pelvic floor physio.
So I'm wondering... Would it be better to buy some kind of simple
biofeedback device, for example the GSR2?
I also have another health problem I've started to worry about, and
while I could start a new thread, I thought I would just continue here
for now since it's part of my story.
I've been having achiness in different parts of my body. The pain
started in my hands and feet, but now it's popping up in different
places. When it pops up, it usually feels very localized but dull, not
sharp. I had this problem a couple of years ago, and it went away
when I used an infrared sauna and went back to eating red meat. I
tried an infrared sauna again the other day, but the pains are still
with me. A few years ago they progressed to weakness, where it felt
hard lifting my arms. I've also had problems with stairs in the past. I
was able to build up my muscles the past year, thanks to the sauna
and a yoga practice, making the stairs easier, but now with renewed
pain I'm afraid again - that I'll lose the strength I built up. A few
years ago when I had these pains, and the weakness, my doctor said
he didn't want to diagnose me with fibromyalgia, and sent me away
for months. So I always feel like I have to solve the problem alone. I
wonder if any of the pain has to do with medication that I'm taking
(Seroquel and Wellbutrin), because the last time I had it was also
when I was on medication, but it's not listed as any of the possible
side effects of those drugs, and I have to take something for my
serious bipolar disorder (for years I fought the diagnosis and had
life-wrecking manic episodes before finally admitting I had a
problem). My thyroid function always tests as normal, and I haven't
had anemia for years. I don't know what to do. It was really bad a few
years ago, and almost feels like a fluke that it stopped.
I hope I'm not wasting your time by continuing to post like this, but
I'm really worried about my health. :(
Again, if anyone has any thoughts, I'd appreciate them.
Thanks,
Sara
In Reply to: Pelvic nightmare posted by Sara [1256.2969] on February 20, 2007 at 01:48:16:
Definitely try the SR, and see how much improvment you could get.won't know till you try. also check out the signs that you are achieving the alpha state. it is under the glossary section
I had the first signs of dysautonomia and after walt told me to try SR, I did so religiously.
After not even 2 weeks of practising twice a day, (20mins each), ALL symptoms of dysautonomia vanished. now dysautonomia free!
The power of the bodymind is incredible!
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sara [1256.3208] on February 24, 2007 at 20:36:39:
Sara, I just read your other post and wonder how this affects bipolar. Maybe you'd better check this out but here is a little about brainwaves from the archives.
In Reply to: Penny posted by Charles [6953.2996] on February 23, 2007 at 18:15:54:
Part of the problem is that I have NO pain in a fairly large area of my lower back unless extreme pressure is exerted.. then there is no sensation of the pain at the time the pressure is applied, but often up to a minute or 2 later and when it FINALLY gets thru it can manifest as pain elsewhere, often an area of my back, torso, or leg that was never touched! The doc says that this "manifestation is in no way connected to my back or even related, but I can duplicate it over and over again to my own satisfaction that it IS a symptom of whatever verve damage that has occured even though the xrays(yes that and an MRI(no contrast) shows while I am laying flat on my back.....I would just LOVE to get an MRI while standing to see what part of the structure while "under load" is causing the problem while trying to walk, and sit.
In Reply to: Re: Pelvic nightmare What the neglect of IC management can progress to. Archive. posted by Sara [1256.3208] on February 24, 2007 at 20:56:42:
Thanks, Sara.
Total body bracing explains your other symptoms as well.
That says to me that, in the long run, the GSRII has a better, though limited, chance of helping the most. The probe biofeedback instruments (pretty expensive) would probably speed up your localized (to the pelvis) resolution but would do less for your systemic symptoms.
Walt
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